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1997 Gluten-Free Gang Conference Highlights
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summarized by Jim Lyles
General Comments
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The Gluten-Free Gang held their ninth annual celiac conference at
Children's Hospital in Columbus, Ohio, on December 6th. The keynote
speaker was Dr. Joseph Murray, a well-known celiac specialist from
the University of Iowa. Dietitian Mary Kay Sharrett spoke on the
newest "Do's and Don'ts" for celiacs. There were separate workshops
covering: the internet, gluten-free (GF) Asian foods, the
mind-body-spirit connection, and manual bread making (hosted by Sandra
Leonard, publisher of The Gluten-Free Baker newsletter). The final
session had a panel composed of Dr. Murray plus Children's Hospital
representatives Mary Kay Sharrett (dietitian), Dr. Li (pediatric
gastroenterologist), and Steve Plogsted (pharmacist), which answered
questions from the audience. The conference attendees then gathered
for a massive potluck lunch.
Sponsors of the program (most of whom had tables with materials and
samples during the breaks) included our own support group as well as
the Central Ohio Celiac Support Group; Ener-G Foods (is there ANY
mail-order vendor that does more for celiacs?), the Gluten-Free Baker
newsletter, Nestle's, Pamela's Cookies, and Sterk's Bakery.
There were 250-300 people who attended this conference. Each
participating family received a "grab bag" with three GF food samples
(GF pasta, cookies, etc.) from the various sponsoring companies.
Also, each received a folder containing: conference agenda; notes for
Dr. Murray's talk; "Gluten in Medications" article from pharmacist
Steve Plogsted; a pamphlet on celiac disease (CD) from the Celiac
Disease Foundation; a subscription form for the newsletter Gluten-Free
Living; information on the CD prevalence study at the University of
Maryland; information (recipes, an article, and how to subscribe) from
the Celiac E-mail list on the internet; handouts and recipes from over
a dozen GF vendors and the USA Rice Council; recipes for the potluck
dishes; and a detailed conference evaluation form. There were
additional handouts at many of the sessions.
One of the unique features of this conference (compared to most other
celiac conferences) is the way they also cater to the needs of
children. There were separate sessions for the kids, broken into
three groups: ages 4-6, ages 7-10, and teens. They even provided
toddler care (ages 2-3). All age groups seemed to truly enjoy the
activities they participated in.
The usual barriers to celiac conferences are location and cost.
Neither applies to this conference. Columbus is only about four hours
away from the Detroit area, so travel expenses are minimal. You could
even choose to avoid a night's lodging by leaving early in the morning
on the day of the conference. And the fees for the conference itself
were only $15 per adult or teenager; with the children being free.
All things considered, this conference represents an exceptional value
for celiacs in Ohio and the surrounding states. Be sure to set aside
some time to attend this conference next fall; you won't be
disappointed!
The remainder of this article highlights a few of the conference
sessions.
The Widening Spectrum of Celiac Disease
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Dr. Joseph Murray, University of Iowa
[Dr. Murray gave a similar talk to our support group in Oct. 1996,
which was summarized in the Nov. 1996 and Dec. 1996 issues of The
Sprue-nik Press. This summary will generally focus on items which
were not covered in those previous summaries.]
There are many different terms which have been used to describe the
disease which we generally call celiac disease (CD); only the first of
these is preferred:
* gluten sensitive enteropathy--this is the most precise
definition, as it describes intestinal damage related to the
intake of gluten.
* celiac sprue--"sprue" implies diarrhea, which many newly-
diagnosed celiacs do not have.
* idiopathic steatorrhea--this means "unexplained foul-smelling,
fatty stools". Many celiacs do not have this symptom, and in any
case the cause is known (damaged villi) so it can hardly be
unexplained.
* non-tropical sprue--again the implication is that diarrhea is a
major symptom, which is not always the case.
A good working definition of CD is: A permanent intolerance to gluten
that results in damage to the small intestine, which is reversible
with the avoidance of dietary gluten. The intestine becomes inflamed
(swollen). Note that the "damage" to the intestine may or may not
affect the ability to absorb nutrients.
Some of the more unusual non-gastrointestinal symptoms of CD include
rickets, dental enamel defects, epilepsy with intra-cranial
calcification, delayed menarche in teenage girls, arthritis
(synovitis), neurologic disorders, mental "fuzziness", and lupus and
other connective tissue diseases. There are also some unusual
gastrointestinal symptoms, including heartburn, gastrointestinal
lymphomas and carcinomas [two forms of cancer], abnormal transaminases
(liver abnormalities), and unexplained weight loss.
Dr. Murray believes that all dermatitis herpetiformis (DH) patients
are also gluten sensitive. The gluten sensitivity occurs in the
gastrointestinal tract. [For all intents and purposes,
gluten-sensitive DH patients are also celiacs; DH may simply be one
more non-gastrointestinal symptom of CD--ed.]
In celiacs, gluten causes problems in the gut, not on the skin. You
could rub wheat flour on the skin or inject it under the skin of most
celiacs without causing problems. Celiacs that have reactions to
gluten on the skin probably have an additional sensitivity or allergy
to wheat or gluten which causes the reaction.
Both iron and folic acid are absorbed in the first third of the small
intestine, which is often where much of the villi damage occurs in
celiacs. Other nutrients can be absorbed further down in the small
intestine. This explains why newly-diagnosed celiacs often have
unexplained anemia and/or low folic acid levels with no other apparent
symptoms.
In recent years the "typical" presentation of CD has been changing.
CD tends to occur at an older age now. The symptoms are more often
atypical instead of the "classic" symptoms of diarrhea, bloating,
wasting, and fatty, smelly stools. It is diagnosed more often in
adults now than in children. The pediatric age of diagnosis is now
4-7 years, whereas it was much younger in the past. There tends to be
less marked growth retardation and fewer deficiencies in
newly-diagnosed celiacs now.
There are many reasons for this. Breast feeding is now encouraged,
whereas in the past it was actually discouraged; this means the
introduction of gluten to the diet occurs later. The IgA/IgG antibody
blood tests often help to "find" celiacs sooner, before the damage has
gotten too severe. Also, there is a trend towards more aggressive
screening for CD in many countries.
Dr. Murray identified a number of other diseases/problems that are
often associated with CD. Besides the "usual" ones, he mentioned
pernicious anemia (vitamin B12 deficiency), autoimmune hepatitis, and
systemic lupus.
CD diagnosis:
* the rate in Europe varies from 1:200 (one out of every 200
people) to 1:2,000
* it appears to be rare in Negroid and Asian populations
* the rate of diagnosis in most areas is proportional to the
degree of suspicion
* 6% of adult Type I diabetics in Iowa have CD
* 1:10,000 children in Buffalo, New York have been diagnosed with
CD
* 1:4,700 Olmsted, Minnesota residents have been diagnosed with CD
(from a Mayo Clinic study)
* the rate in healthy blood donors in most tested countries varies
from 1:100 to 1:300
Among diagnosed celiacs, the ratio of females to males is 2:1.
However, in screening tests the ratio is 1:1. Why? Are men more
likely to accept discomfort as normal?
At the University of Iowa, the rate of diagnosis has gone up
dramatically, perhaps because there is a higher degree of suspicion
regarding CD. Prior to 1988, about 2 cases of CD were diagnosed per
year at the University of Iowa. In 1991, there were 18. Currently
they diagnose 55-60 cases of CD per year.
From 1980-1988 in Iowa, 70% of the diagnosed celiacs presented with
"classic" celiac symptoms. Since 1992, only about 30% have the
classic symptoms at the time of diagnosis.
Many celiacs have been diagnosed or misdiagnosed with other maladies
prior to their diagnosis of CD, including:
irritable bowel syndrome (IBS), sometimes a catchall for
unexplained GI symptoms unless stress-induced
primary lactose intolerance
psychiatric illness
menstrual blood loss
diabetic diarrhea
giardia
inflammatory bowel disease (IBD)
pernicious anemia
peptic ulcer disease
chronic fatigue syndrome
pancreatitis/SOD dysfunction
fibromyalgia
fiber deficiency
Dr. Murray believes in aggressively looking for CD:
* If you are already doing an endoscopy, then always do a duodenal
biopsy. You are "down there" anyway, and it only takes a few
more minutes.
* Screen all high-risk groups for CD. Along with the "usual"
groups, you should look at those with IgA deficiency (which is
more common in celiacs) and Caucasians with lactose intolerance.
* Look for CD in children with non-specific abdominal pain.
Many factors can lead to psychological problems in untreated or
undiagnosed celiacs:
fatigue
not feeling well
the diet
social isolation
vitamin deficiency
direct toxic effect of gluten on a leaky gut
Dr. Murray spoke of the results of a small study they conducted to
compare the results from labs which perform the celiac antibody blood
tests. They contacted 8 labs; 6 agreed to participate. They used
blood serum samples from 20 biopsy-diagnosed celiacs that had NOT
previously had the serum antibody tests. The results:
* 2 of 20 had selective IgA deficiency. One lab actually measures
endomysial IgG when they detect IgA deficiency. (Normally IgA is
measured in the endomysial test.)
* The IgA-based endomysial test was 100% specific to CD, but the
sensitivity was only 55-90% [meaning up to 45% of the time it
failed to find a celiac--ed.].
* The antigliadin antibody test sensitivity was quite variable.
* There was no standardization of the tests between labs; each lab
measures celiac antibodies differently.
Sometimes it is necessary to do a gluten challenge, to get an official
diagnosis for someone who has already been following the GF diet. One
question that always arises is this: How long should the gluten
challenge last? Dr. Murray likes to wait until there have been 2-4
weeks of gut symptoms or a positive blood test before doing the
biopsy.
What is the recommended follow-up after diagnosis for a celiac? Dr.
Murray has this checklist:
ensure a well-balanced GF diet
take vitamins for 100% of the RDA (recommended daily allowance)
calcium and magnesium supplements
cholesterol may rise (malabsorption may have caused it to be unnaturally low)
check for lactose tolerance after the villi have healed
check for complications & associated diseases (such as bone density problems)
The Newest Do's and Don'ts
--------------------------
Mary Kay Sharrett, MS, RD, LD, Children's Hospital, Columbus, OH
The June 1997 issue of the Journal of the American Dietetic
Association presented the results of a study involving wheat starch
and celiac patients. The study found detectable levels of gluten in
the wheat starch used. 11 of the 17 patients that had never consumed
wheat starch prior to the study developed symptoms. Also, 2 of the 3
patients with coexisting DH had a relapse of skin lesions. The study
concluded that the long term intake of "GF" products containing wheat
starch cannot be recommended for celiacs. (Incidentally, the study
also found that 2 buckwheat cereals were found to have large amounts
of gluten [presumably due to cross-contamination--ed.].)
Be prepared for emergencies or natural disasters. Stock ready-to-eat
canned meats, fruits, vegetables and juice, and powdered milk. Freeze
some GF bread or cereal products. Periodically rotate these products
with fresh replacements.
If you have a celiac child, write a letter to give to anyone working
with your child. Include a list of OK foods your child can have such
as fresh fruits and vegetables. If you include processed food items
be sure to regularly update the letter.
Be adventurous. Try new varieties of potatoes (Yukon golds, purple
potatoes, ruby crescents) and rice. Look for new ideas by reading
magazines, looking at ads, and surfing the internet. Schedule a new
food night once a month.
Be organized. Design your own cookbook. Keep a folder for new
recipes.
Q&A Panel
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Dr. Murray; Dr. B Li, Children's Hospital in Columbus, OH; Mary Kay
Sharrett; and Steve Plogsted, pharmacist, Children's Hospital in
Columbus, OH
Q: How common is lymphoma in the small intestine?
A: (Dr. Murray) T-cell lymphoma in the small intestine is very rare
in general. Even in untreated celiacs, it is rare, though more
common than in general. For treated celiacs (i.e., those on a
strict GF diet), after 10 years on the diet the risk is the same
as the risk for non-celiacs.
Q: What testing, if any, should be done on the first-degree relatives
of a celiac?
A: (Dr. Murray) If the relative has no symptoms, then they should
still be screened using the serum antibody tests. If there are
symptoms, then they should be investigated for CD including a
possible biopsy.
Q: What is the latest word on oats?
A: (Dr. Murray) In the USA, oats are not safe for celiacs due to
cross-contamination issues. Also, there are questions about the
dose of oats used in the studies which seem to indicate that oats
may be okay for celiacs. These studies may not have used enough
oats, for a long enough time, to be certain that they do not
adversely affect celiacs. Finally, oats don't really add
significant nutrition to the diet, so why take the chance?
Q: How long does it take to recover once you go on a GF diet?
A: (Dr. Murray) For most adults it takes about 6-12 months.
However, for elderly celiacs it may take 2-4 years, or they may
never fully recover.
Q: Are celiacs more susceptible to illness?
A: (Dr. Murray) Undiagnosed celiacs may be more susceptible to
illness, due to the spleen being affected as well as the effects
of malnutrition.
Q: If a child's physical growth is affected by undiagnosed CD, will
mental development also be affected?
A: (Dr. Li) There are no long-term studies about this. Children
generally bounce back well once they are on a GF diet; however it
is possible that mental development could also be affected.
Q: Does MSG (monosodium glutamate) contain gluten?
A: (Mary Kay Sharrett) MSG does not contain gluten if it is made in
the USA.
Q: Is thyroid disease more common in celiacs?
A: (Dr. Murray) About 10% of my patients have thyroid disease.
Also, about 3-4% of thyroid patients have CD.
Q: Is night blindness a common problem for celiacs?
A: (Dr. Murray) Night blindness is the most common eye problem that
I see with celiacs. Usually the problem is corrected on a GF
diet.
Q: Is smoking a problem for celiacs?
A: (Dr. Murray) Smoking is a problem for anyone! Don't smoke,
period.
Q: Should there be separate GF and non-GF kitchen utensils?
A: (Mary Kay Sharrett) Use common sense. Utensils with smooth
surfaces can be used for both GF and non-GF cooking so long as
they are cleaned between uses. Utensils with porous surfaces
(wooden spoons) might retain some gluten particles after cleaning.
Q: Is it a problem for celiacs to inhale flour dust?
A: (Mary Kay Sharrett) It is not well known how much of a problem
this would be.
(Dr. Murray) Just smelling a gluten product should not be a
problem. However, some of the flour dust that settles on the
nasal passages will eventually get swallowed, which means that
some gluten is consumed and digested.
Q: Can autism be caused by CD?
A: (Drs. Li & Murray) Autism is NOT caused by CD. There is
anecdotal evidence to suggest that in SOME cases a GF and
milk-free diet may help those with autism.
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